This time last year Ian Roberts was hiking 265 kilometres along the Great Ocean Walk for charity, these days he struggles to walk at all.
Motor Neurone Disease has affected people as diverse as Chinese communist leader Mao Tse Tung and the painter Pro Hart. Astrophysicist Stephen Hawking suffers from one type of the condition.
It affects around 1400 people in Australia at any given time and often appears suddenly in people who are otherwise very healthy.
Doctors still don’t know what causes it, and the vast majority of sufferers will die within 3 years of diagnosis.
Ian Roberts was an active man in his mid-50s when he first noticed he was having trouble with one of his legs.
“I had a problem with my left knee, and it felt a little bit weak and felt like it was actually slipping backwards as I walked.”
It took several months of various tests and procedures until finally last October he was diagnosed with MND.
The motor neurones are the nerve cells that control the voluntary muscles that we use every day, like the arms, legs, back and neck.
They also govern the muscles we use for speech, swallowing and breathing.
Motor Neurone Disease Australia chief executive officer Carol Birks says that over the course of someone’s illness “typically somebody might notice a weakness in their hand or their foot, and that will progressively spread to the muscles of the rest of their body so they progressively become paralysed, mostly, and people also lose the ability to speak and to swallow and eventually to breathe, and then they die.”
Ian’s lived in Ballarat for his entire life and until recently worked as a radiographer at the Ballarat Base Hospital, a job he held for 36 years.
He and his family know that time is of the essence with his condition, and between doctors and specialists appointments they are making the most of their days together.
“It makes you look at life differently. We’ve got a little plaque that says ‘don’t count the days, make the days count’ and I’ve already done a couple of things while I’m still mobile that I’ve always wanted to do.
“I rode a horse a couple of weeks ago and the GP was terrified when I told him I was going to ride a horse.”
Ian has a remarkable attitude about his condition, he comes across as both calm and philosophical in the face of so much uncertainty.
“One of my sons said to me, ‘are you angry about all of this and why has this happened?’ and I really must say I’ve never thought ‘why me?’ because I’ve always had the ‘que sera, what will be, will be’ sort of attitude… you’ve just got to stay positive.”
There is no cure or fully effective treatment for Motor Neurone Disease, a disorder that was first medically described 140 years ago.
For now there is only hope that one day soon a breakthrough will be made